Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Thursday, June 30, 2011

A sticky situation...

Okey we've gone from croup, to ear infection, to RSV and now, as officially diagnosed this morning, we also have Glue Ear in Sam's right ear thanks to all the muck provided by the one illness after the other. If anyone ever hears me speak/sign/whisper/mime/appear-to-be thinking these words again "I CANNOT WAIT FOR WINTER" I, personally, give the bearer hereof permission to instantly knock me upside the head without any prior warning or notice of intention to do so.

But it's okay, we've only got like another sixty odd days left until Spring.....H.E.L.P!!!

So, moving swiftly along, the new course of action is another few days on oral cortisone with a cortisone nasal drop as well, whereafter we have a follow up next Friday to reassess the ear pressure and, if there is no or little improvement, we are going the grommet route. I cannot say that I am particularly opposed to Sam having grommets after dealing with Meghan's recurring ear infections basically from birth up until a couple of years ago, specifically the pain she went through when her right eardrum ruptured. The only thing that ever brought her relief were the grommets and we even settled on semi-perm grommets the last time which can stay in for up to three years. But, here's hoping by this time next week we'll have a healthy and completely recovered Smurf crawling around.

Sam's struggle to regain his health over the past two months has led him to seek guidance from not one...not two...but three different Bibles - just to be sure, you undersand!


  1. I'm so sorry...the snot is a lot to deal with. I pray that he gets better soon and you can protect his lungs. Grommets (ear tubes here) are great because the pressure is released and you can put antibacterial drops right into the ear. I really think they help the whole sinus situation. Hugs to will get better.

  2. I agree the grommets seem to do the trick....rather that than earache ouch. Oh Sam you already know where to find all the answers to all life's problems what a truly clever chap you are just like your Mum.........praying for relief for you everyday, much love.